Right-click on colored text and selecting “open in new tab”,
will allow you to return to this tab easily (at top of window) when you finish. Remember, Links are on colored text, not the pictures.
I know i skipped “Truthful Tuesday” this week, despite being here at the house, intensively working on blog the prior week and since Sunday morning. Realizing that even if i worked thru the night there is no way i could finish until later in the week, so … At 10pm Monday night i just gave up. This is NOT a regular blog entry — i am still working on the pages i am trying to share, but more a short explanation.
Been working on blog pages for others. Last year i kept track of my work time spent on posting pages for others, and it averaged 2hrs per page, even a simple copy/paste, find graphic from their FB photos, & get their approval for how it was put together. This year is tremendously higher. Cannot put my finger on the added problems, but in past few months it takes me way longer to do stuff — just generally.
…
Sleep complications have intensified again, which may be part of cause.
Also have started another blog entry on communication. Marital/partner communication has also dropped a step in abilities ladder. ugggh!!
Life goes on, but not being as successful at analyzing and problem-solving for work-arounds these days.
.
i am still working on it.
Havent given up, so dont give up on this blogsite either. ((smile))
.
Related Links
Right-click on colored text and selecting “open in new tab”,
will allow you to return to this tab easily (at top of window) when you finish. Remember, Links are on colored text, not the pictures.
Tru here.
Returned home Thursday from 2018 American Academy of Neurology annual meeting. Above film was our Dementia Action Alliance video entry for the 2018 Neuro Film Festival, now shared at https://youtu.be/kTPTCPaWD6M
Unfortunately was not able to be part of presentation panel, but my friends Robert Bowles, Laurie Scherrer, Brian LeBlanc, and Mr & Mrs Driver did a wonderful job. Spending time with them, and my friend Danny Potts, made for some very special days.
.
.
This was in case i had the opportunity for briefly speaking to neurologists at the meeting:
DO avoid “prescribed disengagement”
(great term Kate Swaffer came up with)
through ENABLEMENT:
.
.
A. DO … BUILD TRUST through direct communication.
Care partner is important in big picture, but I am your patient.
Learn communication strategies from persons living with dementia (because in this case we are the experts).
Each person is different, but for me and many others, primary strategies are:
1) … take the extra time to speak slower. I admit there are some concepts i have lost the ability to grasp, but mostly i am still brilliant … it just takes me considerably longer to get there (with use of strategies not only on my own part, but also for other persons in conversation).
2) … Changing train of thought takes extra time for me, so also pause between thoughts, so that I can change channels and keep up.
3) … Communicate with words, body language and/or graphics.
4) … Meet my eyes and speak directly with me.
.
B. DO … ENCOURAGE Patient to LIVE life after diagnosis.
1) PEER GROUPS: supply ideas for persons living with dementia peer groups. Even if no local peer groups available for more rural areas, there are online groups such as Dementia Mentors and Dementia Alliance International. Both have either weekly or daily video chat available. This not only provides when no local peer groups, but alows for peer interaction without the debilitating noise and busy-ness of multiple bodies in one area. These groups also have other online tools such as written and video ideas for strategies, given in first person voice of those living with dementia. Multiple texting groups available thru FaceBook, some of which are only persons living with dementia symptoms. In this case we are the experts, so give us the chance to extend LIFE-Support. 2) NON-PHARM along with pharmacological ideas for management of grief, added stress, and whichever combination of dementia symptoms patient might encounter on this path.
3) REASONABLE ACCOMODATION ideas for those who are still able to work. But be aware that most employees with dementia are unable to retain time for peer, family, and self-relationships to remain emotionally healthy while dealing with the added emotional strain from grief and dementia symptoms. Strategies to deal with dementia symptoms consume much extra time, which must come from somewhere.
.
Related Links:
Right-click on colored text and selecting “open in new tab”,
will allow you to return to this tab easily (at top of window) when you finish. Remember, Links are on colored text, not the pictures.
For reference (pulled from my 2018 Google Calendar): We arrived Air B&B noon 19Apr. AAN Brain Fair began for us at 9am on 20Apr2018. Hard Rock Cafe with group at 2pm 21Apr2018. Lunch with Debra Cherry in JapanTown 22Apr2018. Panel Presentation was Monday 23Apr2018. No note on when we left.
Some of my friends are experiencing what they are concerned is “apathy”
regarding current violence in the world.
Others are in a frenzy of panic-mode.
For me, I know that my circle of influence is small enough that
I do not have ability to make positive change for that sort of disaster … in the time I have left.
.
It is not that I do not “care”
— it is simply that i no longer consider it my responsibility to invest in it.
.
I have invested plenty of time and energy to emotionally process the violence in my own life.
Psychiatrist agrees that I have processed past trauma in healthy ways.
.
For me personally,
part of processing and accepting my current trauma of dementia symptoms is that
mostly I avoid investing in violence (even emotionally, by reading, watching movies/news, etc)
— unless I have power
to change some aspect of the future
THRU that investment.
.
Just like each adult, I need to choose priorities
for my investments of time and energy.
.
My hope of change
is in the documentation of lived experience
for dementia symptoms;
my own and those of my friends.
.
My hope is that some day in the future
these stories of lived experience
will be valued enough to make a difference in the larger perspective.
Right-click on colored text and selecting “open in new tab”,
will allow you to return to this tab easily (at top of window) when you finish. Remember, Links are on colored text, not the pictures.
For me (and i am the only one i can really speak for)
additional Eyesight or Hearing problems can be an indicator for other functions of my brain.
The other primary predictor can be my balance.
If my perceptional senses or balance are less than my usual “normal”,
then i re-consider priorities for that day.
If i have spent more time correcting mistakes
… than time on “productive” tasks, during first few hours of the day, then i re-consider priorities for remainder of the day.
On those days must put ALL functions in compound Low — maybe even several days in a row.
Allow extra time for all tasks.
… And these are appropriate days to procrastinate.
Postpone the Lower-priority tasks to enable success on the high priority tasks …
or instead, if symptoms are severe enough,
i might postpone the purpose-driven tasks (such as dementia advocacy) and devote the day to meditation-type tasks.
Artistic endeavors that are in my “Future” craft box for days when my abilities are Lower-Level. See “Crafting Tips” entry >> https://truthfulkindness.com/2018/03/05/crafting-tips-memory/ .
If must stay in compound Low more than a few days in a row, then i consider doctor visit to check-out non-dementia issues.
and re-evaluation of time/energy priorities
— because perhaps my “normal” abilities just dropped a step.
***
Suspect during past months my own abilities have dropped another step of the Ladder.
Several folks have mentioned concern, so i now need to begin re-evaluation process.
Grieve – accept new dys-Abilities – find new work-arounds (if possible) for highest priorities of my purpose in Life, and also new ways to continue doing the enjoyable things in life.
May need to consider further revisions in various types of communication , in order to continue crucial relationships at best level possible…. But that is another entry, LOL.
. Graphic was created with pictures of canes made by my Uncle, and another. I had a pet goose when he made the two on the Left.
Related Links:
Right-click on colored text and selecting “open in new tab”,
will allow you to return to this tab easily (at top of window) when you finish. Remember, Links are on colored text, not the pictures.
Right-click on colored text and selecting “open in new tab”,
will allow you to return to this tab easily (at top of window) when you finish. Remember, Links are on colored text, not the pictures.
Sometimes i hear complaints from members of families, that their loved one is not taking proper care of self. Well …
Recently discovered that i have lost the smell sensor for body odor
(not completely a bad thing, if in public much, LOL).
But when combined with memory problems, can cause complications with self-care.
Strategies:
Now, when i go to bed, on my pillow i see 5×7 pictures reminding me to set out deodorant & teeth supplies, set out early-morning meds, put portable phone on charger, & turn on night-Lights. Before i put my head on the pillow i can carry the 5×7 pictures around to keep my tasks in mind, then set the clamped pictures in the top of my sock drawer before i go to bed. In the morning, when i get my socks, the 5×7 clamped pictures get set on my pillow.
Every person living with dementia symptoms is different in placement of swiss-cheeze holes for mental processing. For me, visual processing is still best way to process information (such as InfoGraphics). So picture of placement for deodorant & toothbrush much more likely to get complete understanding than just words on a list. For someone with low visual processing, another strategy might be better. This information can be found in neuro-psych scores.
With deodorant and toothbrush out on countertop, i am much less likely to forget to use them.
PS: also lost smell sensor for flatulence but … oh well, LOL 😀
Comment from my dementia friend Karen Creekmore on 07Dec2022:
I can relate to brushing teeth several times, etc!
(I live alone, so probably not useful to some).
*What’s works for me(for now):
*Part of my PM routine is placing all items needed on bathroom counter for AM routine(toothbrush/paste, deodorant, eye drops, lotion, ect).
*As I use each item, I put
them back up.
I’m sure you(we)will continue
adjusting to our ‘new normals!
— Karen Creekmore on 07Dec2022 (with permission).
Tru here. Leaving for travel again next month. One of the things i always dread is strange bathrooms.
TOILET (Symptom/memory)
Sometimes cannot find flush mechanism.
i know i have been shown many times, but if it does not have a handle sticking out somewhere, then my frustration has begun.
It always worries me.
SINK
(Sx/memory, and lack of initiator):
Public restrooms often have sinks with faucet-type devices, but no way to know which is hot, cold, or soap … and no way to turn any of them on or off.
Sometimes they have a single handle, but cannot tell what to do with the handle in order to get desired water. Sometimes they don’t even have ANY handles ! i know i have been shown many varieties before – with instructions,
but instead, i stand there in confusion —
then anger.
Then my engine stalls.
Often have problems with my “starter” (or initiator) … so after confusion with faucet controls, dont know what i need to do first to wash my hands, and which is what and how to work ANY of the strange-looking things on the counter.
Not unusual for me to just give up.
DRYER
(Sx/over-sensitivity to noise):
Many strange bathrooms have no towels to dry your hands. i am expected to use contraptions with noise that makes ping-pong balls explode in my head. The harsh scary sound makes me want to run from the room in panic mode.
EXIT
(Sx/disorientation to space, and short-term memory):
Large public bathrooms (such as airports) will often have three hallways; one is entrance/exit, one to stalls, and one to sinks. Problems with multiple hallways when i dont remember which i have already tried, so how to get out.
On a bad day, same thing can happen in any restroom with multiple doors on the stalls (especially if stall doors are tall); cannot register which is a stall door and which is exit door, and do not remember which doors have already tried.
RETURN
(Sx/disorientation to space, and short-term memory):
By the time i finally get out of those unusual bathrooms, with unusual faucets, unusual handles, and unusual soap dispensers … i am often near tears. Does not make it real hopeful for me heading the correct direction when i finally find my way OUT of the bathroom, or recognizing my husband. Better to find a handicap single-unit, or bring someone with you. Next-best is someone waiting at door of bathroom. Third option is someone at table watching, and they stand to wave and bring you to the table. I guess a fourth option might be cell phone. (But personally, my Service Dog brings me to my husband, LOL.)
In the confusion, i probably forgot to wash my hands (or gave up). On a good day i wont complain if you try to get me to wash my hands “again”, but it could make a bad day worse. So Afterward, it might be better if partner can offer “skin-softener” wipe (preferably cleanser mixed with moisturizer).
Right-click on colored text and selecting “open in new tab”,
will allow you to return to this tab easily (at top of window) when you finish. Remember, Links are on colored text, not the pictures.
Wally Cox; WaterColor Class 2016 >> https://truthfulkindness.com/index-persons-with-dementia-pwd/wally-cox/watercolor-2016/
Tommy Dunne; Gardens & Dementia >> https://truthfulkindness.com/index-persons-with-dementia-pwd/tommy-dunne/gardens/
Harry Urban; April Laughter >> https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/april-laughter/
Non-dementia personal memoir page added to Bits n Pieces; Mother’s Day for Connie >> https://truthfulkindness.com/bnp/part-3/mother-connie/
Index for other contributions here >> https://truthfulkindness.com/index-persons-with-dementia-pwd/
